Visit Rebekah's Page to get updates, read messages and send messages to Rebekah and her family through comments. This is a public "diary" of a family whose little girl started a battle with inoperable cancer in April 2005. In December 2007 our house burned down. And in September 2009 Mommy was diagnosed with a terminal disease (a genetic form of ALS) that took her to Heaven in July, 2011, leaving Daddy and two young girls to make it on their own. Over several years of ups and downs, you will get into our hearts, minds and souls as we share joys and sorrows. It can sometimes be very difficult to read. We hope it is also uplifting. Please find joy in what you read here.
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Tuesday, August 14, 2007



The Results are In...

and all is stable. No changes. Nothing remarkable. All good news.

That is not to say that all is well. She continues to have sinusitis, fluid behind the ear, etc... We just have to keep on keeping on... Keeping up with the therapies, doctor visits, and all the protocols.

When treatment started, Rebekah's height ran in the 50th percentile. Now it is in the 10th percentile. She is still gaining height, but not much. Since she is still growing and hasn't dropped off the chart we won't do anything yet, but we will keep an eye on it. We will see how she's doing next scans (in 3 months) and evaluate again. If she falls off the chart or if she isn't gaining any height then we will probably talk with an endocrinologist. One more doctor to potentially add to the list.

Today, Rebekah had a bad nose bleed. I don't know exactly why it happened. She sneezed and then it was bleeding - bright red and didn't want to stop. After several minutes and lots of tissues, pressure and ice we finally got it stopped. She continued to sneeze and have some lingering issues, but it was mostly better. Rebekah's nose often bleeds, but it is usually from some sort of blow to her nose (like falling or running into something) or from picking at it. This seemed different. When doc looked at her today, he said it looked like she had a cut in her nose. Don't know why. We just have to keep an eye on it. It is part of her life. There is just too much damage to her nose and she will have to deal with this sort of thing.

We still don't have an answer to why Rebekah has had major balance issues at times. I haven't heard back from the ENT, although I have left a couple of messages. When I asked doc today about whether they looked for any sort of "brain based" reason for balance problems, he said there wasn't anything obvious and if there was anything, it was very subtle and they didn't see it.

I'm working on getting Rebekah's immunizations up to date. She's supposed to start Kindergarten in September and she needs to be up to date for that. We are doing one shot at a time with a couple of weeks between them. Tomorrow is one more shot. She doesn't much care for them. But it has to be done. We are getting there, but we may not be caught up when school starts. One day at a time...

Sarah had her speech eval with the therapist that works with Rebekah. She definitely needs some help. She's now on the waiting list for Rebekah's therapist. Next week, she has an appointment with the school district to see if they think she qualifies. If they think so, she has a full eval with them scheduled for early September. I expect that she probably will qualify, so then we have to figure out what her schedule might look like.

Rebekah starts Kindergarten in September. Regular Kindergarten is 3 full days roughly 8:30-2:45 - Monday, Wednesday, and Thursday. We are adding another half day on Tuesday (8:30-11:30) to that. After school on Monday and Wednesday, we may continue with Rebekah's speech therapy. We will have to see how it all works out. I don't know how well Rebekah will handle it.

Right now, both girls are at a point where they sometimes will take a nap and sometimes won't. I'm not sure how much I should push the nap or or not. So some days I push and other days I don't. Some days they seem like they really need it and others they don't.

Sarah will be three next month. She looks so much like her sister did at that age. I know it is silly, but I find myself wondering if Sarah will have something go wrong like her sister. Rebekah was 3 years and 4 months old when she was diagnosed with cancer. I just can't help think about it once in a while. I guess I just have to get through the next 6 months or so before I'll quite feel comfortable. Sarah is wearing so many of the clothes that Rebekah wore during the first part of treatment and that just adds to it. I have to constantly remind myself that Sarah is a much different child than Rebekah.

Grandma M made it home from Rehab Friday after breaking her leg three weeks ago. She is glad to be home and she seems to be getting by. I haven't been able to get over and help her out since she's been home. I've been running, running and doing more running. I only have so many hours in a day and I'm already burning the candle at both ends...

Speaking of which, it is time to head for bed.

4 Shared:

At Wednesday, August 15, 2007 8:17:00 AM, Blogger Tara Left a thought...

onHi Rebekah and family!! I just wanted to let you know that I still read your posts everyday and think about you all of the time. I am glad that Rebekah's scan were good and didn't show anything new. How exciting to be starting kindergarten. Will she be going to Banks? You are in my thoughts and prayers.

Tara Shannon and the Shannon Family!

 
At Wednesday, August 15, 2007 9:38:00 AM, Anonymous Debbie Left a thought...

Thanks for posting the results of Rebekah's tests -- I've been watching daily. So glad to hear that they're clear. You're all in our thoughts regularly.

 
At Thursday, August 16, 2007 7:10:00 AM, Anonymous Anonymous Left a thought...

Still believing that God has touched Rebehah and will continue to bless her body and life with more healing. Keep on trusting. Leanne from Pa.

 
At Saturday, August 18, 2007 1:21:00 PM, Blogger My Kid's Mom Left a thought...

So happy to hear that Rebekah's scans were clear.

It's only normal that you'd be wondering about Sarah's health as she gets closer to the age at which Rebekah was diagnosed. I went through the same thing with my Sara and DAnielle. And, I was able to breathe a HUGE sigh of relief when we got past that age.

Still think of you often and keep you in my prayers.

 

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